Jane was and is a carer for her children with medical needs and eldest who is autistic. She also cares for her elderly parents.

She has worked helping children and adults with SEND professionally and voluntarily.

After becoming disabled she dedicated herself to helping those with medically unexplained symptoms that were often ignored and also disabled.

She helps Carers Support West Sussex as a Truste and also volunteers for the national EDS UK Support charity and runs SEDS, Sussex Ehlers-Danlos Support and Hypermobility Spectrum Disorder with positive activities in Sussex.

Advocating for #actuallyautistic people in north Sussex and those with visible and invisible disabilities and conditions she ensures that from social care to health, to transport needs at Gatwick there is ’nothing about us without us’.

Parent of Rusper teen urge public to support local charity’s fundraising weekend

THE parents of
a teenager with a rare genetic condition affecting only around 30 people
worldwide are urging the public to back a Mid Sussex charity’s big fundraising
weekend.

Mikey Turner,
17, from Rusper, has been living at Chailey Heritage Foundation for four years
after his health had worsened at home and it wasn’t safe for his parents to
look after him.

Mikey, his
parents and two sisters are now all taking part in their own challenge
events on Sunday May 31.

And they are
asking the public to join in as well, raising much-needed funds for the
charity, which is based between Lewes and Haywards Heath.

Chailey
Heritage’s annual fundraising Focus 10k event, due to be on Sunday
May 31 at Borde Hill Gardens near Haywards Heath, had to be postponed
because of the Covid-19 crisis.

But now,
instead the charity wants people to take part in their own sponsored 10k,
5k or mini mile on the same day, or any time until June 14.

Any money raised will be match funded by Focus
Group, based in Shoreham

Mikey’s dad Andrew said:

“Me, my wife, our two daughters and Mikey are all joining in, and we urge everyone to as well.

“As a family of five, we will each be completing two tasks on the Sunday May 31.

“One daughter who’s in Australia at the moment, will be planting melons for 5k.

“Mikey’s two challenges are to be in his ‘stander’ for ten minutes and also to complete a 5k bike ride onsite at Chailey.”

It was at the
age of around three that Mikey’s parents, Andrew and Jenny, thought something
may be wrong.

Mikey appeared
clumsy at times and there were problems with his speech.

Six years
later, and aged nine, Mikey was finally diagnosed with a rare neurodegenerative
illness called genetic malfunction of the UBTF gene.

His parents
invested in a purpose-built house at Rusper, between Crawley and Horsham, to
help look after Mikey but when his condition worsened four years ago, he moved
into Chailey Heritage Foundation.

Mum, Jenny, 56, said:

“Chailey Heritage has been an absolute lifeline for us.

“We were really struggling back in 2016. Mikey’s needs had become more and more complex and he required a team of eight carers to provide care 24/7.

“When we first visited Chailey, we were both struck by the very positive ethos, and now it feels like home from home for Mikey.

“We regard Chailey Heritage as an extension to our family. The staff are amazing and there is huge trust between us and all those who care for Mikey.”

Dad Andrew, 59,
said it was a huge step for Mikey to move out of the family home.

He said:

“We see the excellent care that Mikey receives and have huge admiration for the role of all the staff.

“We were struggling with Mikey but the last thing on our minds was that he might have to move to be cared for.

“It was a huge step for the family and the feeling when we got into the car and left Mikey at Chailey was a dreadful one. But we could not provide the quality of life that Mikey needed”.

At Chailey
Heritage, with the help of the specialist team, Mikey is able to take part in a
wide range of activities including swimming and IT lessons.

Mikey’s
condition was undiagnosed for many years, which made it hard to plan for his
needs.

Even now with a
diagnosis, planning is hard as he is one of so very few with this condition and
being one of the eldest, neither his family nor the team at Chailey know what
to expect.

Mum Jenny said:

“He communicates with a subtle nod of his head but he has lost the ability to laugh, cry or smile. He was due to come home for a four-day Easter holiday but that was put off because of the coronavirus and staff said he felt very low that it wasn’t happening.

“We haven’t seen him now for nine weeks and that is extremely difficult. He normally comes home three times a month and we make sure that is real family time.

“We would all like to say a heartfelt thank you to everyone at Chailey Heritage Foundation.”

One of the ways
the Turners would like to show their appreciation for Chailey Heritage is to
take part in the charity’s fundraising events.

Nina Gopal, Chailey’s Head of Fundraising, said:

“We are naturally very disappointed that, like so many events, our annual Focus 10k has been impacted by Covid-19.

“But like many other charities, we are still in need of funds so we decided that the event could still take place but in a different way.

“The government is now advising people that they can take unlimited exercise with social distancing, so why not take part?

“The challenge is to complete your own 10k, 5k or a mini mile for the younger ones and seek sponsorship.

“If you don’t want to run, you can still join in by devising your own challenge connected to the number 10.

“Ten bunny hops, 10 press ups or 10 laps of the garden – the important part is to stay safe and have fun raising much needed funds for young people like Mikey.”

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